Death and Mourning: My perspective
Death usually knocks unannounced, and a loved one’s survivors are left to mourn and grieve the loss. But, of course, there is custom and tradition to uphold, so a funeral is planned to celebrate the life of the lost one, plenty of tears are shed, and memories are remembered. But, what if the act of death isn’t so sudden but long and drawn out? What if a diagnosis of death is shared months or years in advance because of a medical ailment or slowly unfolding illness? That unfortunate reality is where I found myself with my beloved wife.
She and I wanted to die together, preferably in a plane crash. We had talked about this, as morbid as it sounds, long before she became stricken with the disease. Neither of us wanted to die before the other or take a long time to die. Neither of us wanted to be the one to endure an extended period of grief. As I reflect on this now, it seems selfish on our part to have considered this line of thinking, but inevitably death wasn’t going to cooperate with our plan anyway.
My wife began to feel tired and weak about 5 years before we found out what was going on. She often went to the doctor to explain her fatigue and lack of strength, but no answers were immediate. Then, finally, our daughter, an MD, came to visit from New Zealand. After seeing her mother walk around, she told us that she needed to be evaluated by a neurologist as she had sensed something odd watching her mother that no one else had picked up on. So we made an appointment in Albuquerque, a three-hour drive each way. She went in for what should have been a brief test and appointment that ended up elongated to nearly two hours. The diagnosis was alarming and grim- she had ALS, an untreatable neuromuscular disease that affects the body’s ability to function normally.
A new journey began for us that day. We had no way to know precisely how her body would react or be affected. The doctors shared various symptoms and anticipated timelines, but every patient’s journey can be different. That uncertainty was both a blessing and a curse. The result, though, was that her life would be cut short.
We consumed articles, research, and medical literature about ALS. Finally, after a bit of time digesting the hand that we had been dealt, our faith (we were both raised as Christians) helped us realize that though this was not how we expected her/our ending to be, it allowed for a new beginning of sorts.
For more than two years, I was her caretaker and was a daily witness to watching her go from a competent woman and loving wife to a person who couldn’t cut up her food, bathe or go to the bathroom by herself. At first, her hands failed to work, which meant no more knitting, then her arms wouldn’t work, and she couldn’t hold her viola to play in the orchestra as she had participated in for over 50 years. Each week she became weaker and weaker.
She hated every minute of this time, especially the part where I had to take care of her as she continued to desire to be independent, but her body wouldn’t allow it. Eventually, we moved together into an assisted living facility where I received help with her, with our daughter coming periodically to help when she could.
As my wife’s health continued to deteriorate, we both were aware that her time here on Earth was limited. Thankfully, she was not in physical pain, nor was she in emotional turmoil. She didn’t see her death as something to rant and wail about. Somewhere along the way, she began to see her impending death as an opportunity to rejoin her mother and brother, who had passed before her. I understood this and knew that offered real comfort to her. The question hanging around was, “what comes next for me”? We sadly knew the answer for her, but I had to figure out a new plan.
I knew I would have to move because the cost of the assisted living facility was more than I could afford without my wife’s long-term care insurance and retirement income. As she lost more and more bodily control, we added hospice care, and it became clear that her time to go to the heavens was nearing. I found an apartment and scheduled a date to move our stuff into it. Little did I know that the evening before I moved, she would pass away peacefully in her sleep. The funeral home picked up her body, I notified our family, and despite the magnitude of what had just happened, I still had to go ahead and move.
I didn’t break down and grieve like I thought I would. I have never been one to experience long bouts of crying or sadness. I knew I had a particularly reticent nature, one that wasn’t overly emotional but honestly, I did go through a phase where I asked, “what is wrong with me,” shouldn’t I be devastated? We raised three children, relocated periodically, dealt with life’s ups and downs, and were married for more than 55 years. Shouldn’t I be emotionally wrought? I had read enough to know that is what society expected me to be.
My wife died in early March 2020, just before we were all in quarantine because of the COVID-19 pandemic. My daughter had come to town when we knew death was near for her mother, and she was able to help me move but then had to leave within a week to return to her home in New Zealand because of the escalating disease and countries closing travel borders.
To this day, nearly 18 months after my wife’s passing, I still wonder why I didn’t react to her death in an “expected” or conventional way. Could it be during the years as her ALS took hold, I had mourned a little bit every day and had processed much of my grief/loss by the time she was actually gone? Or was it because I was comforted that she saw her end of life here as a bridge to seeing her brother and her mother again? She did not fear her own death, and that consoled me in some way?
I know I cared deeply for her because I think of her regularly and most definitely miss her presence. However, I think mourning is different when death takes a long time to come versus a more traumatic end.
Since I did have several years to understand and accept her death, I had on numerous occasions pondered, “what’s next for me?”. After many considerations, I determined that I wanted to write and share ideas that I had thoughts about. I hated writing during my formal working years. When my kids came to me for help with their writing, I sent them to their mother, for she wrote beautifully.
Well, if you are wondering, ironically, despite my early life distaste for crafting sentences, I find myself enjoying putting pen to paper (or keyboard to computer screen). Consistently, I have been writing 500- 1000 word articles most days of the week. Am I any good? Not sure. Do I want to write a book? Unfortunately, the answer is “no.” However, my writing is becoming better, and it helps me fill my days. It keeps me off the couch and away from the TV. It encourages me to read more and better understand our greater world and people in general.
My only wish is that my wife could be here on Earth to share in my newfound passion, or maybe I am being inspired and guided by her from up above in this next chapter of my life.
